Most people who have known us for a while, know we’ve always been pretty busy. Planning a trip or a busy month are things that I’m pretty good at doing. It shouldn’t be a surprise that with the holidays approaching November wouldn’t have us slowing down. But post diagnosis things sure have changed, we are still just as busy, but my focus has shifted. Now I’m pretty good at being present and living for the day…although that means lots of things slip through the cracks all the time! Lol! We hit the ground in November running! The Cure Starts Now Beard It Up Campaign was launching and was something our little cute warrior got to be a part of with some pretty cool bearded guys!
The fundraising campaign was asking bearded men to give, get a cool shirt, and help fund the home cure for cancer. Joshua couldn’t grow a beard but we still had a team and love the energy The Mean Beard Company has brought with their support of the campaign!
Emmaleigh had her end of the season cheerleading party at Get Air. It was so much fun watching her do her own thing with her new group of girlfriends. Watching her fall in love with a sport that I love so much was so special and I have her coach, team mom, and teammates to thank for that. The girls had a great season and it was sad that it was over for this year! We both can’t wait for next season!
Right after the party we drove to the Air Force Museum to meet the Wolf’s for a special night time event! We weren’t there long but it was so nice to just catch up with them and enjoy the extra museum activities provided for the night! Especially the really cool airplanes that LJ rode inside.
We spent the first weekend of November basically as busy as possible trying to avoid scanxiety the best we could. But it was time to start packing and head to The Great Wolf Lodge! Em was so so helpful. She packed herself and her brother’s clothes and was even thorough enough to create an itinerary with outfits to go with our day she had planned. Zero clue where she gets any of that from…just kidding, it’s one hundred percent me.
When we got to the lodge, the first thing on Miss Em’s itinerary was the water park! So while we waited on our room, we got dressed and headed into the waterpark. Em headed straight to the wave pool and LJ was ready to try out some new slides! He went down all the slides in the kiddie section and loved them all. I just hung out in the water at the bottom of the slides as he would climb the stairs, slide down, and rush out the water to do it again. All by himself, he was walking (sometimes running) very slippery stairs all by himself.
No videos of him on the slide because I was too busy enjoying that but here is one of him looking so strong and courageous in the water!
Sometimes it really is so hard not to scoop LJ up, stand on top of something high, and scream about the miracle God is working in his life! Instead you’ll often find me sitting with tears in my eyes watching LJ doing something that “normal” 4 year olds should be doing. I’m not crazy, just a really passionate Mama who’s heart is overflowing with gratitude.
We played in the water park all afternoon while we waited on the Varns family to get to the lodge! The Varns’ daughter Addison is also a DIPG warrior who is seeking treatment at Cincinnati Children’s. I know I’ve said it before but there is just something so special about being with people who know and understand exactly what you are going through. It was MRI week for Addison too, so both of our families were putting our bravest faces on while enjoying ourselves at the lodge.
After a night with little sleep due to lodge construction and MRI anxiety, we woke up early to head to the hospital in the misty freezing rain! LJ wasn’t phased by anything, not even fasting, and decided to jump from bed to bed while waiting on us to get ready. I so wish I could have sent this video to his doctors and say “are you sure he needs the scan? I think his tumor is behaving!”
When we got to the hospital LJ was his normal happy go lucky self until it came time to access his port. He was more nervous than normal to begin with then the nurse took an oddly long amount of time to access it. She held the very large needle near his port, which is very close to his face, for what felt like forever but was probably two minutes. Though two mins is a very long time for a one inch needle that is about to be inserted into your 4 year olds chest to be hanging out in front of their face. Even with all that, LJ was such a trooper and only shed a few tears but we got him accessed and were on our way to radiology.
We got LJ dressed and waited for anesthesia to come and tell us everything we have heard now more than 40 times before he is put to sleep. This anesthesiologist took that into consideration and kept it short and sweet! I took him back to the table to be put to under and he was so chatty! He was telling all the nurses and techs about The Lodge and the water slides. The anesthesiologist asked if LJ had drank my coffee that morning and I said “of course not, he’s fasting!” lol!
After he was sweetly asleep we went down to the cafeteria to get some food. Emmaleigh is so patient and kind the way she fasts with her brother when he has too. She never complains or questions anything, it’s just part of her life too. After eating, we went to the family resource center to hang out in one of the quiet rooms. It’s a small room with comfy reclining chairs and the ability to have dim lighting. We took a short nap in there before going back to the radiology waiting room to watch LJ’s number on the screen.
The number finally turned colors and I could go back to be with him in recovery. He was still asleep and did not want to wake up at all! We had to take off his MRI outfit and put his clothes back on him (aka my least favorite part, that I will have the energy to tell them he’s not changing next time) and get him to drink something so we could leave. I carried my sleepy big boy to Daddy in the waiting room and we got in the car to head back to the lodge! Once there LJ laid down for a little while and ate a pancake! Sister got dressed and as soon as LJ was ready to walk we got his suit on and headed down to the waterpark.
I dont know what they gave him while he was in the MRI but the kid woke up braver than ever and walked into that waterpark ready to move onto the bigger kid slides! He went down racing Daddy first, but then went down completely alone! It is so cool watching him being the little dude that he deserves to be able to be! We bribed him to go on the family slide and all of that braveness quickly went away as he screamed like a maniac down the entire thing!
We finished the day with magi quest, pizza, and story time. We spent the evening with the Varns, both sets of parents on edge as we knew tomorrow morning would bring results of our baby’s MRIs. But we did the best we could dancing with our kids during the lobby dance party. Another highlight of that evening was watching LJ race up and down the hall with anyone who would race him! One of my favorite pastimes include watching LJ run!
The next morning we rushed to pack up and head to the hospital. Dr. Fouladi was out of town so we were meeting with another doctor, Dr. De blank. First thing we learned was that LJ’s tumor was STABLE…again.
To hear that his tumor is still stable and even smaller in some measurements is the most wonderful feeling. It’s really hard to even describe. Just the most relief, excitement, and gratefulness you’ve ever felt.
The Saturday following the MRI I was able to share my testimony at an event hosted by Rural Ohio Women in the Word. I’ve been given quite a story. Every time I think it should be time for my life to get easier I’m blindsided by something else. It took falling in love with Jesus for me to realize that my story can be and will be used for God’s glory if I allow it. It is a powerful story about how protective of me God really is and currently I feel like I need to share it with anyone who will listen. The event was all about sharing your story and how impactful it could be to others. I was honored to share, along with 2 other amazing women that day.
I’ve shared about scanxiety multiple times but this MRI I was able to realize something else that happens regarding scans. I’m going to call it post-scan-decompression though I’m sure it has a name. The week following scans this time was one of the most mentally challenging weeks I’ve had in a while. I was completely mentally and physically exhausted. I spent the week napping, crying, and fighting the guilt of my own feelings when I thought I should be celebrating a shrinking tumor and enjoying my children, I could barely get out of bed. It snowed and the kids and I went out for a bit and enjoyed that but I couldn’t get it together enough to go out and play with friends in it the next day at Wild and Free. I knew the kid’s would have had such a great time but couldn’t bring myself to being around people. It was a rough week but my God and my support system is so strong I came out of my decompressing funk by the weekend and was able to decorate the tree with my beautiful family!
The next week was “all about Emmaleigh” week! I spent the week as the driver of the mom taxi and she spent the week rehearsing her life away for her first musical, Frozen Jr. It was many hours in the car but being able to do something just for her is so special. Her first show on Friday night made every minute in the car completely worth it! She had two more shows Saturday and was just as precious. It is clear that our girl loves the stage but we didn’t need a musical production to tell us that!
The day after the musical was over we drove to Indiana to visit the Berrios family. We are so lucky that Deanna’s hometown is only four hours from us in Ohio! Her family is so inviting and loving, it is an absolute treat to visit with them there! We got to meet baby Tristin and Emmaleigh and LJ both had a hard time putting him down! He is the most angelic baby I have ever been around! Watching Em play dollhouse with Carmen and LJ play tracks with Jaden was seriously a dream come true.
We drove into Chicago the next day in a 12 passenger van with all our kiddos. In case you don’t know I have a crazy phobia about parking garages and here we were driving a huge van into one. But Eddie handled it like a boss!
We had such a good day exploring a very tiny piece of Chicago with some of our closest friends! We went ice skating, played in awesome playgrounds, visited the Bean, found an amazing gluten-free restaurant, walked our kids up and down Chicago streets, and ended the day in a playground! LJ napped while the big kids (including our husbands and Carmen) played tag in the playground. I really don’t think the day could have been any more perfect!
We said our goodbyes after touring Deanna’s childhood home and drove home! We basically unpacked, repacked, scooped up Dolce and headed to West
Virginia to visit family! It really is so nice living stateside and being able to road trip as we please! We arrived at Troy and Carrie’s with a very warm welcome and two “happy to see family” kiddos. Papaw and Mimi came over shortly after we got there and before long the kids were playing with Alexa and performing all kinds of songs!
We ate the most wonderful Thanksgiving dinner at Great-Mimi/Grandma’s house. Emmaleigh had the most beautiful list of what she was thankful for and when LJ was asked he said “Thankful that God helps me to be Cancer’s Kryptonite!” Emmaleigh finished the meal with a mini-sermon on the importance of God in your life versus worldly things and on His ability to forgive. I adore my children’s faith and watching them cling to and thank God for everything life throws at them is one of the proudest moment a Mama can have.
We finished our trip to West Virginia with visiting the trees in the Blennerhassett Hotel lobby. They were gorgeous!! We also visited the mall and were treated to Frozen 2 which Emmy loved and LJ slept through a lot of. LJ spiked a random high fever while were were at the mall before the movie, it was brought down quickly by Tylenol thankfully, but he wasn’t feeling his best. DIPG takes away the ease of your kid just having a cold or not feeling well. Everything that LJ does we are looking for signs of tumor activity. Every sniffle or fever in this case would normally have me googling for hours. This time I decided to pray and go with my gut that this was in fact a random bug/fever and if it continued of course we would take him in but for then we would let his sister enjoy the movie with her family! I really am so thankful for the peace I was able to receive while little man was so warm and that it resolved so quickly.
As this season of thanks comes to a close and we move into celebrating the birth of our Savior I’m really excited. Excited for all the fun stuff, memories to be made, but most of all I’m just excited to celebrate another holiday season with both of my children. Thank you God.
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.1 Thessalonians 5:16-18